My name is Matt Sinclair and I was diagnosed with Chronic Myeloid Leukaemia on 19th October 2005 at the age of 27.
I have written this diary to keep my family and friends informed how things are going with me in Scotland.

Tuesday, January 30, 2007

Photos: Dawsie, Darren and I at Australia Day BBQ; Jas and Aussie Dog Lucy; Snow time behind my house - Freezing Geese; Queens View looking up to Loch Lomond

The weather wasn't what we were used to for this time of year. For most of my life, I've spend Australia Day enjoying a few cold beers and cooking a BBQ feast in the hot sun - the middle of January can send down a few scorching days. But with a little persistence, endurance and the thought of a nice charred burger, us boys stuck it out in the cold winter of bonny Scotland and turned out a pretty tasty BBQ. Most of the neighbourhood probably thought we were a bunch of nutters but while they were inside munching on their haggis, we were enjoying our Scottish version of Australia Day...gold!

The first few weeks of January have proven to be pretty quiet over here and that's given me some time to get sorted for my accent up Mount Kilimanjaro. As I've said all along, I will properly commit to it and the end of next month when I need to hand over the cold, hard cash. That's when the fun will begin... My goal is to raise at least £15,000 for the Anthony Nolan Trust as most of the other fundraisers I've done were for Leukaemia Research. We're slowly putting together a team of my mates...even my old man has put his name down for the stagger up 20,000 feet. Watch this space for more info...

I've only discovered recently the amount of people out there writing blogs about their CML experience. Obviously I would never wish this upon anyone but in a way it's good to know there are others going through the same thing as I am - tests, PCR's, hospitals, crazy nurses. I guess the fact that it's been about 15 months since I was diagnosed, has meant that most things in my life have been forced to continued as normal.The first months after diagnosis is all about the shock of what has been told to you by the docs, the next few months after the that are usually to show your positive outlook and strength, most will try fundraising for their chosen Leukaemia charity, then before you know it's been 6 months and you're still stuck with it. As the year progresses, most CMLers are equipped with enough haemotology knowledge that would put some normal practisioners to shame and it's something you eventually become quite comfortable talking about. I noticed myself chatting away too freely on the odd occasion, only to be met with a confused, blank look. Then the 1 Year Diagnosis Anniversary roles around eventually - for most people, they are still feeling well enough to continue their job, sport and hobbies but it's about now that you realise that this will stay with you for life. The disease and the experience.I'm lucky that I have great support around me and I also feel lucky that I can now go out with most people and the words CML or Leukaemia won't get mentioned. I'm somehow bordering on the line of normal and the cancer sufferer...But as I've written time and time again, it's the attitude you take that will determine whether something can grab and pull you down with it or you can take a positive stance and push yourself in every way to overcome what has been put in your way. The choice is there, laying in front of you.

For me I've chosen to kick the shit out of CML and my buddy in doing this will hopefully be my new medication I am to start in 1 1/2 weeks time - Nilotinib. Dubbed "the son of Gleevec", it's made by the same company Novartis and it's been made 30 times more potent that the wonder drug itself. Fingers crossed...

* In the meantime if you get a chance, check out Shira's website - she has just gone through her 3rd bone marrow transplant and she is doing really well..

Monday, January 15, 2007

After my Christmas present arrived from work in mid-December, both Kas and I were wondering what we should do with it. As you can imagine, in the booze industry, you're going to receive quite a bit of product as your present. We weren't complaining, just wondering who we should call in to help us "use" it and keep it out of the hands of me, a non-boozer. There it was set, we'll hold this years NYE bash at our new pad...it was a brave decision but in the end it was a good night had by all. The countdown went smoothly and the first few minutes of 2007 were spending bouncing up and down to the Proclaimers, singing "I would walk 500 miles". The neighbours were surprisingly unworried by the noise that we generated from the karaoke machine that ran for about 6 hours straight. Funny how they only bashed the walls when my mate Dawsie grabbed the mike and commenced his howling impression of Tina Turner...gold!

I think I can be quite sure to say that most people suffer some form of the post-Xmas blues...the parties are over and quickly it's back to work, the New Year resolutions and trying to work out how you blew so much cash over the past month. For me, it meant heading back to the Oncology ward at Glasgow hospital and have a chat to the docs about why my PCR tests weren't doing as well as they'd hoped. As my last post said - the latest result was 2.6%, about the same as the past 3 tests. This obviously called for some adjustments and changes in my health management...

I caught up with my Consultant last Wednesday as planned and the discussion was basically that my body wasn't responding to Gleevec as they'd planned for. Not the best news. Luckily however, before moving down the Bone Marrow Transplant route, two more CML drugs have risen there heads and given hope for Gleevec-resistent patients - me! It was decided that I will most likely move to the new drug Nilotinib (AMN-107)...it's been dubbed "the son of Gleevec". It works in roughly the same way but is considered to be 30 times more potent and carries practically zero side effects. Sounds good and it's something I'm quite keen to get started on - let's start smashing these Leukaemia cells down so that my PCR reads 0%!!

So, the next catch up at the hospital will be in about 3 1/2 weeks and hopefully these new meds will be ready and waiting. This hasn't dampened any of my enthusiasm and positive outlook - it's actually made me more determined than ever to kick the shit out of the remaining Leukaemia cells still milling about somewhere inside. I wonder where they're hiding?...they've probably taken up refuge in the extra bit dubbed the "Christmas pudding role"...damn icing sugar gets me every time!

As for now, I'll keep my head down and bum up, working hard to keep the Scottish booze industry cog moving firmly in motion. I'll also continue to use the Next Generation gym here in bonny Glasgow with Gav every couple of days...the weather hasn't been too good and has kept my mountain bike parked in the dark garage until Spring time comes around. Something I'm sure my mum, mother-in-law and Kas are extremely happy about...